Living with familial ALS

ALS alters life expectations – I took some liberty with the spelling to name my blog. To be diagnosed with a disease for which there is no cure makes you stop and take stock of your life.

Before I got sick I really felt like I was finally in the groove. I work as an Administrative Secretary at a large public elementary school, a job I love! I got back into running a couple of years ago when I learned Chi running and could run without knee pain. I trained for and ran two half marathons and had another coming up in October. I started growing out my curly hair a few years ago and began to love it after hating it most of my life. I have a wonderful husband and a 15-year-old son who started life at less than two pounds as a micropreemie and is now a thriving teenager who is taller than me.

My symptoms came on suddenly. One night in December 2015 I was over at some friends’ house for dinner and when I talked after dinner my mouth was extremely dry and I couldn’t move my mouth to say words correctly. The biggest symptom seemed to be dry mouth, although my son and husband started to accuse me of mumbling. The holidays came with travel and I wasn’t able to go to the doctor until the end of December. My family practice doctor ordered a blood test for Sjogren’s Syndrome, which can cause dry mouth. She also referred me to an ENT for the dry mouth and an Endocrinologist for my thyroid nodules. The Sjogren’s test came back negative. I got an appointment with the ENT but it was two months out. It took even longer to get an appointment with the endocrinologist – I was scheduled in June.

I have ALS in my family. My mom, my aunt, and my cousin all died from ALS. It was in the back of my mind that this could be ALS but I didn’t think it would start in my mouth. My mom’s started in her arm. She died in 1994, and since that time I have avoided learning about ALS and had to say things like, “I am not my mom, I am not getting sick”, when she was sick. If I thought about it too much I would start to notice tingling in my feet and hands. And any little muscle twitch was scary.

The ENT appointment finally came. She looked in my throat with a scope and didn’t see anything but saw something with my vocal chords that made her refer me to a neurologist. I walked out of that appointment very frustrated. I wanted her to find something, anything besides ALS.

My husband met someone who’s brother had died of ALS and his started in his mouth. Oh man, I did not like hearing that.

My neurologist appointment was the next week. I then got a call from the endocrinologist saying they could fit me in on a cancellation the day before the neurology appointment. Yay! I wanted to see if my thyroid nodules could be causing my voice problems. The endocrinologist looked at my nodules with ultrasound and found a nodule that my previous doctor hadn’t seen. It was right in the part of my throat that was sore regularly. I was really hopeful that this was the cause of all my problems. But the endocrinologist knew I was going to see the neurologist the next day and said she knew the neurologist would order a workup so she would see me again after he was done with me.

The neurologist did more blood work, and ordered a brain MRI and chest x-ray and referred me to speech therapy for a swallow study. The speech therapist watched me swallow cookies and fruit and said she didn’t think a swallow study was necessary. She gave me tongue exercises and three syllable word sheets – I could pronounce all the sounds, they just got garbled if I spoke too fast. I did the exercises regularly and they seemed to help. I could speak more clearly after doing my speech therapy. This made me hopeful.

After more tests that showed nothing, my neurologist referred me to UCSF “to rule out ALS.” At this point I realized my anxiety was out of control – I was noticing, or so stressed that I was manufacturing, tingles in my toes and hands. I went back to my doctor and got some anti-anxiety medication. That’s what helped me get through the month I had to wait until the UCSF appointment. Any time the anti-anxiety meds started wearing off my mind would go right to worrying that I had ALS. It also helped that I kept busy during that waiting time, that dragged on and on.

I even went back to the endocrinologist and she said my thyroid is large but my voice problems do not sound like the kind caused by thyroid nodules. Dang it!

Hi Meg. I am good friends with Sharon Ryan and that’s how I was led to read your blog. My heart goes out to you for this horrible diagnosis. I recently lost my brother to this horrible disease. He was an RN and when he started having symptoms he said thought he had a brain tumor. When he found out it was ALS he said he wished it was a brain tumor. Such sad words for anyone ever to have to say. I will like to follow along on your blog and your journey and I will hold you in my thoughts and prayers.

Dearest Meg,
I just read your blog from my friend Barb Farrell (she used to bbsit my two girls). My heart & prayers go out to you. I will put you on our prayer tree. Please add me to your list so I can follow your blog. God bless you.

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